Tag: flying with a disability

It’s that murky area, the one where a bad day turns into a bad week, maybe a bad month, and we can’t find our way out. These are the scary, dangerous times for many.

I recently had one of those weeks, all emotionally spiraling out of control. A series of deaths around me triggered my own anxiety around mortality – fears of leaving my wife and daughters behind upon my passing – created by a not-so-long-ago health crisis. The anxiety and fear piled on and I felt a confusion, a disassociation, a fear that my life, too, was destined to end sooner than later.

As the week went on, I found myself feeling more and more isolated, even though my everyday life didn’t change. I was surrounded by people – my work, my family, my community – but still felt alone. My wife recognized my behavior, wondering if I was “back there” again? It’s something she’s seen come and go, especially since my health crisis.

I remember sitting alone at our kitchen table one eve, irrationally thinking that all around me was temporary, that this might be the last time that I looked out the windows at the early-summer, green-carpeted hills that surround our home. Just as this lush season will fade, might life, itself?

I grabbed my cell phone and sent a text to my lifelong best friend, asking if he could talk? I knew he could, as whenever either of us reach out, the other understands the importance of answering. And, so for an hour, we talked about what I was feeling, and when I hung up the phone, the spiral was neutralized.

If we are thinking, feeling, introspective individuals, we’re going to experience difficult times in life. At those moments, it’s crucial that we’re self-aware enough to reach out to someone for support, clarity, validation of feelings. We need to be self-aware enough to say, I need help stopping this emotional merry-go-round I’m stuck on.

For some of us, a partner, family member, or friend can offer the grounding perspective we need. For others, where the issues are more clinically based, professional help is needed. In either case, our reaching out is key to our survival.

Now, I know that reaching out is hard and scary. It’s difficult to share that we’re struggling, if not impossible for some. At the very least, by reaching out, we’re exposing our deepest vulnerabilities and extending trust. It can seem harrowing.

However, no one can help us if they’re unaware that we’re struggling. So often we wait for others to come to us out of concern. But, if we’re not showing signs, they can’t be expected to. This can be compounded by the fact that many who are struggling master the art of hiding it — again, showing vulnerabilities is extremely difficult for many. Therefore, it’s vital that we, ourselves, reach out, that we push past our apprehension and fear in our own best interests.

I’ve learned that in my toughest times, reaching out has never failed me. When I’ve reached out, I’ve found the most profound human experience: an embrace.

We all struggle at some point in life, the causes of which are unique to each of us. When we find ourselves there, let us not be ashamed or question ourselves or, worst of all, isolate and hide our struggles. Rather, let us serve ourselves by reaching out to those around us – and experience the power of common human experience. We never need to be alone, nor are we.

I smiled – as always – when I rolled up to the airline ticket counter, and offered a friendly good morning to the ticket agent, placing my companion’s identification card and mine on the counter. The agent took our I.D.s, pulled up our tickets, and said, “You’re going to have to check your bag – that’ll be $25.”

“It’s a carry-on,” I replied, glancing at my bag.

“No, it’s too big to be a carry-on,” she replied. “You have to check it.”

“It’s a certified carry-on, and I’ve flown with it countless times as a carry-on, never checking it,” I explained.

“Do you want to fly today or not?” she asked. “”If so, I need that bag and $25.”

I suppose I could have asked to set the bag on the measuring board, or asked to speak to a manager, but I didn’t want to make the agent any angrier than she was, I didn’t want to add any fuel to whatever was burning her up inside that morning. So, I simply checked the bag as she insisted.

As my travel companion and I headed toward security screening, my companion was outraged, not understanding why the agent was so rude? “I don’t know why she was so rude,” I answered. “People are rude all the time. I just hope her day gets better.”

I was heading home from a successful business trip; I was blessed that $25 wasn’t an issue for me to afford; and, I was excited to be going home to my daughter. Really, I was happy to just be on my way – no worries at all.

The fact is, not everyone is going to like you or be kind to you – often for no reason at all. From your own family members to complete strangers, people are going to be rude, unkind, possibly downright mean. However, we have the choice of buying into their misery, or just letting it roll off us like water on glass – not letting it stick. If we know we are living kind, loving lives that give to others, it’s doing ourselves an injustice to let others bring us down. Be yourself – celebrated, not degraded or just tolerated.

I had a nice flight home, ultimately reaching the arms of my welcoming daughter. And, I truly hope that ticket agent’s day turned out just as well.

For the third time, U.S. Airways luggage handlers have dropped my power chair from around eight feet in the air (off of the top of the conveyor belt near the cargo door). Fortunately, that particular power chair is like a Timex watch: After two years of use, travel, and being dropped from the conveyor belt three times, it takes a lickin’ and keeps on tickin’!

But, not without battle scars, of course. I mean, when a 300-something-pound power chair falls from eight feet onto the pavement, bad things happen. This time, the power chair landed with such a blow that it actually twisted – not bent, but twisted – some seriously-stout metal structures, destroying an armrest and back cane. Still, the power seating system and power base are fine, ready for more flights (and drops). And, because I’m part of my own power chair company, yes, I am a bit more fortunate than others because I can piece it back together, cover up the gashed areas with black paint, and be off to the next event in real time. Still, in the moment, I’m as stuck as anyone would be at the airport with a smashed-up power chair – not a good feeling or scene.

However, here’s what I really don’t understand: A bunch of people saw my power chair fall off of the conveyor belt – clearly smashed-up – and no one acknowledged it, pretending that it never happened. This time, someone parked it, tweaked as heck, at the gate counter (rather than bringing it to the plane door like they should), and the gate agent came down to the plane door, simply telling me that they couldn’t bring my chair down because it wasn’t working. Duh – it took an 8-foot tumble to the tarmac!

I really appreciate the hard work that the luggage handlers perform – it’s back-breaking, in weather extremes, for not a lot of pay. I also understand that they’re not trained to handle mobility devices, nor is the equipment that they use designed for loading and transporting a big, heavy object like a power chair. However, on a deeper level, how have the airlines created a culture of no responsibility? Call me naïve, but where are accident reports and such? How can a company’s employees and procedures damage customer property without any sort of personnel accountability? Sure, a damage claim can be filled, but that doesn’t resolve the systemic issue of zero accountability among employees – they literally can destroy your property, and no one cares. And, the slight cynic in me wonders if the airlines have determined that it’s more cost effective to just pay an occasional claim than to train personnel and create procedures?

A portion of my career involves flying, and the highlights of my life have been traveling with my teenage daughter the past few years. So, despite a bad track record, and undoubtedly more challenges to come, the rewards of air travel far outweigh the risks and consequences.

Yet, I’d still feel better if I could just fly somewhere without worrying if I’ll be mobile when I land?

With my 40th birthday here, I wished to note it with an act emblematic of the life I’ve lived – overcoming some personal challenge, and hoping to meet others and grow in the process.

Friends suggested skydiving, which is strikingly cliché, and actually void of any real risk. When it comes to tandem skydiving, your odds of dying I learned are 0.4 out of 100,000, whereas my riding my power wheelchair to work each day has my risk of dying many times higher, 2.5 out of every 100,000. Therefore, while most unknowingly see skydiving as a brave, risky feat, it’s actually a totally controlled, unrisky feat, far safer than simply crossing a street.

No, for my 40th birthday, I want real adventure, real risk on my own terms, so I’ve bought a plane ticket to Las Vegas, heading out by myself, cross country, to see where it all leads.

The first part of my journey is getting to Vegas. We’re in an odd time of post-ADA corporate disability rebellion it seems, where airlines, in particular, have been proving alarmingly disability-phobic. Over the past two years, we’ve heard discouraging stories of airlines refusing to fly single disabled passengers. In fact, two days before this writing, a young woman with muscular dystrophy, who uses a ventilator, was by all accounts illegally denied boarding a Delta flight home.

I fly often on business, but with colleagues, so this will be my first solo trip in quite some time (I always flew alone years ago based on necessity, never having an issue, but this recent trend toward disability discrimination by airlines has me curious as to my forthcoming solo flights). I know CFR 14, Part 382 that outlines federal guidelines for how airlines must treat passengers with disabilities, but gate agents, in their ignorance, don’t seem to follow federal regulations or acknowledge basic human dignity these days, so I’m curious to see what it’s like for a guy as severely disabled as me to fly alone during these times. Again, it’s easy for any of us to say it’s a piece of cake to fly with a companion. An acquaintance of mine is always boasting to others how easy it is to fly with a disability; yet, his wife or a caregiver is always with him – man-up and go it alone, and see how you’re treated, is what I always want to tell him. Therefore, that’s what I’m doing – manning-up and leaning into it – seeing what it’s truly like to travel alone with a severe disability in 2011. Do I think I’ll get kicked off of a flight like Johnie Tuitel, the motivational speaker with cerebral palsy similar to mine who made national headlines by being unjustly removed from a flight? I hope not – namely, because I’m extremely familiar with federal airline regulations and my airline’s policy, where I trust that I can cordially talk my way through any situation. However, I am curious to see what, if any, ignorance I encounter.

Of course, logistically, a lot else could go wrong during the trip. What if I get stranded at an airport based on weather? What if my power wheelchair gets damaged or breaks? What if any number of scenarios go wrong? Again, I fly all over the country with colleagues and there are no worries on such trips. But, now I’m a 40-year-old with severe cerebral palsy flying to Vegas alone – that’s an adventure, one where I’m placing myself in my sole confidence to get by no matter what.

Once I’m in Vegas, I’m pursuing an interesting tact – as a person first, and as a writer second. I’m meeting up with a lifelong friend, and the goal isn’t to know Vegas, but to get to know the people of Vegas, seeing where it all leads. We’ve both been to Vegas countless times – mostly on business – and the uniqueness of Vegas is that everyone is from somewhere else, all with an often amazing story – from the inspiring to the tragic. I’ve spent the last 22 years telling my story, and I want to hear others’ stories on a diverse, candid scale, the types of conversations you’ll typically only find in Vegas. Drinking, gambling, and strippers, don’t interest me – been there, done that, didn’t impress me. I want to know about the waitress working at the Denny’s on the Vegas Strip at 1:00am – what’s her story, what brought her to this point in her life?

The fact is, at 40, there’s absolutely nothing remarkable about me or my story – I’ve merely lived life potentials that everyone possesses – and I’m eager to hear how others have accessed their potential, or struggled to do so. I have no idea who we’ll meet, or where conversations will lead, but I hope realizations by all will be made in the process, that a common humanity runs among us regardless of who we are, where we come from, or the lives we live.

I’m getting on a plane headed for Vegas. Where it will lead is the mystery that is sure to create the adventure.